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Monday, December 7, 2009

AzCentral Story: Blogs offer support to mothers of ill children

Check out this great story, written by the same reported who wrote Gabriella's article a few weeks ago! The blog title is linked to the original story.

When Heidi Skidmore's 6-month-old son Ethan died this year, it wasn't just her family and friends who attended his funeral.

Followers of Skidmore's blog showed up, too, near-strangers who had also delivered meals during tough times and posted encouraging notes on the blog that documented Ethan's battle with a heart defect.

They call themselves "heart moms," and they never would have met if they hadn't started following one another's blogs, reading about one another's children, acting as one another's therapists when nobody else could understand what they were going through. And they comprise one of several "mommy blogs" that are connecting Valley mothers of sick or terminally ill children to people who offer comfort, help with problems and tips that lead to answers regarding new treatment.

Andrea Simmons of Gilbert always wondered why people bothered with blogs.

But when her son Owen was prenatally diagnosed with a rare heart disease that left him with only half of his heart, she understood why they did.

"I started the blog to keep my family and friends updated so my phone wasn't ringing off the hook," Simmons said.

Within months, Simmons was connected with hundreds of other heart moms around the country.

They shared advice and battle stories through the surgeries and seemingly eternal hospital stays.

During one lonely trip to Palo Alto, Calif., for Owen's treatment, local families reached out by inviting Simmons to dinner or volunteering to keep her company.

"Blogging saved my life," Simmons said. "I never thought there was a
community out there."

There are other ways parents reach out when their children fall ill.

Web sites such as CaringBridge .org allow them to create informational pages that can be constantly updated.

Phoenix mom Katie Dambrauskas used CaringBridge to keep relatives in the Midwest posted after her 3-year-old son Jake was diagnosed with a brain tumor almost two years ago.

"In the beginning, it was really hard to talk about it because you're just going through the moment," she said. "We took everything and wrote everything in there."

She posted throughout his treatment, when the cancer came back, and after doctors said there was no hope left and hospice took over care.

Then, a family in England helped her with research a treatment doctors were considering for Jake. The treatment had been successful for that family, and their story gave Dambrauskas hope.

She still writes, but not as often. Not since Owen recovered, becoming cancer-free and stunning his doctors in the process.

Skidmore, of Mesa, wasn't as fortunate. Her son was diagnosed with a rare heart condition when she was 19 weeks pregnant.

She wasn't interested in blogging until after she heard about Ethan's condition.

After he was born, she started blogging about four times a week, sometimes twice a day.

"It can be overwhelming to rehash it on the phone to everyone," she said.

What started as a means for keeping friends and relatives in the know became a therapy and emotional support.

"There were times when people could just tell (I was upset) by the way I was posting and then an hour later some heart moms would come and take me to dinner," Skidmore said.

Even though Ethan was never well, his death was unexpected. Around 4:30 a.m. on Aug. 21, just a few hours after he died, Skidmore posted the news on her blog.

Within an hour, her phone was ringing off the hook.

About 25 heart moms and their families attended his funeral.

Skidmore still reads their blogs and considers them one of the main reasons she got through losing her son.

"When my best friends would call sometimes I wouldn't answer, but when heart moms called, I always answered," she said.

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